Wednesday, December 31, 2014

Here are some photos from AAC families, near and far, in December---thanks to all of those who submitted pictures! The next AAC family post will be on the last day of January (2015!). Photos can be emailed to uncommonfeedback@gmail.com

5 year old Westin talking to Santa using Proloquo2Go!

From Lemmy's mom: "Lemmy (age 4) was talking to his Aunt Rita with the iPad using Speak for Yourself. He was talking about various toys and I (his mom) went and found them for him. He was really amused. I think he was enjoying me running around the house trying to find them."

Harry (3 years old) chatting while hanging up Christmas decorations in Australia!

Harry uses the PODD pageset on the Compass app.

Josh (6) at the park . . .

and feeding ducks!

Isaac (5) uses TouchChat60 to talk to his mom. She said that winter break is a little too long for him!

Wyatt greets Santa and wishes him a Merry Christmas! (You can read more about that meeting here.)

Cymbie heads out with her sister, Ainsley (3), and Speak for Yourself to see some friends on her 7th birthday!

Mirabel, age 3 and lives in Ohio, "helping" mom at work on a weekend with Speak for Yourself in her talker, a plate with donuts and Baby Signing Time on her DVD player. She is also signing eat in this picture!

Tom (using Speak for Yourself) joking around by spelling out the word "poo!" (Editor's note: Ha! Maya would totally do this.)

E (3) and C (19 months) color together and use C's talker to discuss crayon colors. E already knows how to help C into babble and is gentle and playful about prompting use of C's talker. C is in her second week of using SFY!

"We have since added the keyguard to C's talker. She is sitting on Mommy's lap making jokes- calling Mommy the names of her therapists and giggling about the silliness!"

Joshua using his iPad mini with Speak for Yourself at the zoo!

From mom: "Carlos Andres, who uses a Tobii I12 with eye gaze. We've had a HUGe mount that is almost limiting, however, the table stand has finally arrived!! I kept the box in the picture! We are so thankful for "Tobii" he's become part of the family. ;)"

From mom: "Santa left a message for the kids on Felix's talker, obviously Speak For Yourself was pretty easy for him to learn. 'Thank you for the cookies, your (gingerbread) houses look great, love Santa.' "

Thursday, November 20, 2014

Although the phrases "communication breakdown" and "communication repair" may be new to you, the concept isn't. I guarantee you've experienced many of this situations, especially if you have children, or a spouse.

A communication breakdown happens when there's a disconnect between the sender of a message (the speaker) and its receiver (the listener).

Think about how often this happens in daily life--even for adults with normal hearing and typical speech skills (the ability to speak loudly, to clearly articulate sounds, etc). Maybe I take special notice of my own communication breakdowns because I hate repeating myself----but it happens pretty often. Now imagine how often it would happen if you couldn't speak clearly.

Listen to Maya speak in the video below. You may be able to guess what she's saying, but it's more likely that you won't. In the second loop of the video I provide context and captions---clues that serve to repair the breakdown, and everything becomes more clear.

Maya's speaking life is more or less one big communication breakdown. I expect that this will shift, that as her articulation improves she will be more understood, but I also expect that the shift will happen slowly. Unfortunately, people are so eager to understand her speech, to validate and encouraging her speaking, that they often jump in, make assumptions, and kind of run her right over. She'll say "bug" and they'll reply "Bus? Yes, you rode a bus to school. Your bus is yellow, right? Do you like to ride the bus?" More unfortunately, when these breakdowns happen Maya tends to just stare blankly at her listener, or wanders away to something different. Rarely (very very rarely) does she take the initiative to stand her ground, to tell the listener they misunderstood, to try to get her point across. She doesn't try to repair the breakdown, she gives up.

This isn't unexpected, really. It's taken her a long time to speak at all, and if she tries and it doesn't work . . . well, then what? She's got a limited repertoire of speech sounds, and it's hard to think on your feet and come up with another way to more clearly express something that you couldn't say the first time. More than that, communication partners speak quickly, change topics quickly, and move on quickly. Life doesn't pause while you try to come up with another way to say "bug." She also has had a lifetime's worth of experience of not being able to keep up verbally. Frankly, I'm consistently impressed at her dogged pursuit of speech, and the amazing proliferation of speech and sound attempts that have occurred over the past 2 years. And, while sometimes she can use her talker to clarify what she's saying, sometimes the word (or sentence) she was saying just isn't there---or maybe she doesn't think to switch from speech to AAC.

And so, communication repair has become a huge target of ours. We are determined to empower her to become frustrated when people don't understand, to assert herself and say "No, that's wrong!", and then to draw on a variety of tools to help clarify and re-communicate her point.

Step One: Provide the Tools

I started by creating a page in Maya's talker (she uses the Speak for Yourself app) that can be easily used for communication repair. The ideas for the words and phrases on this page came from a variety of SLPs and AAC families, gathered primarily in a few FB groups. (A lot of these came from a great draft in the SFY user group.)

If you're an AAC person, there are two things to note. First, this page uses a fair number of phrases and sentences. In general, I like having one button per word, but I think that in times of communication breakdown an AAC user should be able to protest/redirect very quickly. Second, I have maximized the motor planning of a SFY user by stacking the buttons in the same location as things that they are related to on the primary page. For example, the phrase "slow down" is located in the same area (right column, fourth button down) as the word "down" on the primary page.

Here is a master list of the phrases included on this page--since the buttons can only hold a certain number of characters, it's difficult to guess what they all mean. (The word in parentheses shows which location the word is under, when they are related.)

Top Row:

I don’t understand (I)

I understand.

okay (OKAY)

Ask me a yes or no question
(ASK)

Put that word in my talker.
(PUT)

I need help to find the word
I want. (HELP)

Second Row:

You don’t understand (YOU)

Do you understand?

Are you listening to me?
(ARE)

What do you mean? (WHAT)

I have no button for that.
(NO)

Third Row:

Something from the past.

Something from today. (TIME)

Something in the future.

I have a question. (HAVE)

I give up. (UP)

Fourth Row:

That’s not what I said. (NOT)

the opposite of

Slow down. (DOWN)

Fifth Row:

It starts with

I will spell it

I will give you a clue
(THINK)

This person is a clue

This place is a clue

You aren’t close

You’re getting closer

You’re very close

You got it!

Start over

Sixth Row:

It rhymes with

I changed my mind (KNOW)

I’m talking about (TALK)

That’s not right (RIGHT)

I’ll tell you how close you
are.

Try to guess (TRY)

Can you say it again? (AGAIN)

Seventh Row:

It sounds like

This is frustrating (FEEL)

Listen to me! (HEAR)

I want to tell you something
(TELL)

A question

An idea (SLEEP)

A place (THAT)

A thing (THIS)

A person (FRIEND)

An action (WALK)

A feeling

An event (WHICH)

Bottom Row:

It’s important

It’s not important

Never mind

I need a new word (NEED)

Wait! I have something to
tell you. (STOP)

Be patient with me (BE)

The color coding is as follows:

Orange= the most important buttons I want her to use (kind of assertive
buttons)

Blue = questions

Bright yellow = strategies

Greyish purple = hints

Peach= things that I wanted to look
like a clump

White = everything
else

Step Two: Teach the skill
This is clearly the more difficult step. How do we get her invested? We've learned that she is much more likely to use a new communication skill if she's had the opportunity to practice it . . . but it's difficult to practice repair. If you're the listener, it's hard to model how she should give clues (and sometimes it's hard to realize you've misunderstood in the first place). If you try to create fake misunderstanding scenarios, it's a gamble whether the AAC user will play along. And the idea has to be explained, too . . . "hey, if I don't understand you you should tell me to stop, ok?"

Enter one of our awesome speech therapists, who created a fantastic social story to introduce the idea of communication repair. The book starts by giving voice to the frustration of a communication breakdown, then moves on to lay out the two important parts of communication repair: stop the listener and let them know a breakdown has occurred, then try to use other tools to relay your point.

The book was introduced featuring one strategy from her communication repair page, "It starts with . . . ". This is a great technique for Maya, and one that she used spontaneously in the past, but she never had a button to basically say "now I'm going to tell you the first letter." New pages will be added to the book as different strategies are introduced and practiced during speech sessions. I'm going to send a copy into school and have shared it with our other therapists, so that they know what we are working on and can be mindful of potential communication breakdown and our repair strategies.

I hope that this page will help Maya become a more assertive communication partner. She has the right to be understood, and she has the right to say "Hey! You're not correct! Stop talking and listen to me!" Now it's our job to make sure that she has enough practice with it that it will jump to mind when a breakdown occurs, and that she feels like it's worth her time and effort to work through the repair process.

Friday, October 31, 2014

Thank you to the families who sent in pictures of their AAC users this week! (I didn't even manage to get a picture this week.) I have loved seeing, and sharing, photos of AAC users and their families/teachers/therapists. I am going to continue with the AAC Family posts throughout the year on the last Friday of each month---so feel free to email them my way (uncommonfeedback@gmail.com) at any time.

Without further ado . . .

This is Charlie from Nottingham, UK, showing off his skills using his new Talker with the PODD app . . .

even on horseback!

This is Lily Grace, age 5, checking out the sea otters at the aquarium with her papa. Lily Grace uses a PODD book.

This photo is a selfie of Alyssa Hillary (22), of Yes, That Too with laptop showing desktop and text to speech app. The speakers aren't really showing up (off to the side) but the set-up is a Windows 8 machine with eSpeak and Logitech speakers, for part-time AAC use by a graduate student and TA (that'd be Alyssa, taker of picture and person in the picture).

Joshua, 5 years old, using Speak for Yourself.

Hosea (4) using Speak for Yourself at a pumpkin patch in Florida.

Mirabel, age 3, getting a treat after her audiology appointment. Two modes of communication . . . saying "donut" on the talker followed by signing "please" . . .one very clear request!

(Which was promptly rewarded!)

Lemmy in Virginia using SFY on his iPad! He's just starting out and still a bit excited (as you can see from that blurry hand haha). He's exploring babble with his mom.Lemmy has CVI, so his buttons are rainbow colored with high contrast black and white icons.

Felix showing off his talker with its new red cover!

Less than a year ago, Harry (now 3) used a 20 location PODD book to announce his mom's pregnancy on Facebook . . .

and now he's using the 60 location PODD pageset on an iPad (on the Compass app) to chat while his newborn sister sleeps! (Congratulations on becoming a big brother, Harry!)

Thursday, October 30, 2014

My daughter Maya, like many children with special needs, has
undergone (too) many evaluations. Her skills and knowledge have been
quantified, over and over again, with varying degrees of accuracy. Many parents
of children with special needs speak about receiving the evaluation reports
with a hint of PTSD in their voices and tears in their eyes. I see their posts
in Facebook groups, about a son who has “the cognitive functioning of an 18
month old” or a daughter with “very little receptive language, according to the
recent report.” Many have been devastated by these reports.

I am not one of these parents. I have not been devastated by
the reports.

Ok, the first one briefly knocked the wind out of me, but I recovered
quickly.

Why not? Perhaps because Maya’s scores have been promising?
Or “average”? Or “low average”?

No. No, not because of that. As a matter of fact, her first
round of cognitive testing was abysmal. She scored in the bottom 0.4th
percentile---meaning that 99.6% of all children her age were more cognitively
advanced than Maya. Her receptive language evaluation (at 2.5 years old) estimated
that she could produce 1-2 words and that she understood 1-2 words.

They said that she understood 1-2 words. At 2.5 years old.

I wasn’t gutted by the reports because I knew they were
worthless. At the time, I thought everyone knew they were worthless---that they
were just a means to an end (the end goal being to score “disabled enough” to
qualify for services). I thought the results were like She’s in the 0.4th percentile—wink, wink. It wasn’t
until I became more immersed in the special needs community, particularly the
community of parents who have children who are functionally nonverbal, that I
realized something startling---people are believing these numbers.

Parents, you cannot believe these numbers.

Not only will believing the numbers send you down some sort
of spiral-of-terrible-feelings, but believing them will change your
expectations for your child. The numbers will change what you believe your
child is capable of, they will plant seeds of poisonous doubt, and they will
corrode your ability to presume competence. If you have a child who doesn’t
speak, one of your biggest, constant jobs in life will be to advocate for their
people to believe in them . . . so if you start to lower your expectations,
others will follow.

Plus, really, the numbers are garbage.

My undergrad degree was in science (zoology), my first
master’s degree was in teaching secondary science, and I was a classroom
teacher for 8 years. This means that I have both spent a fair amount of time
reading scientific journals and that I have experience with assessments of
children (and their limitations). I listen to news stories with a skeptic’s ear
(who funded that study, what was the
sample size, how did they control for these 12 other variables, etc). I see
the limitations of a standardized test as quickly as I see the potential data
collected. I take all reports with a grain of salt, by nature. But when I saw
the way that Maya’s evaluations were done, I realized that it’s not just a
grain of salt needed when looking at cognitive assessments (or receptive
language assessments) of nonverbal kids, it’s a mountain.

Let’s think about the
tests: If an evaluation is being done on a child who can’t functionally speak,
can’t read, and can’t write, answers to questions would basically be limited to
two methods of production: pointing to
an image in a field (which item would you use to drink?) or completing performance
tasks (such as arranging tiles to match a pattern). There are significant variables
in both of these models that can result in scores that are erroneously low---false negatives.

pattern sheets that would be used with tiles

Performance Tasks: It’s easy to see why the
performance tasks would result in low scores for many of our kids. The only
examples that I clearly remember were about using tiles/blocks to duplicate or
continue patterns. For a child like Maya, who struggles to use her fingers to
manipulate anything small, this was a very challenging task. She also has apraxia, which means that the messages from her brain to her muscles get derailed---so she could be thinking "move the tile forward" but her hand won't respond. When we got to these questions, Maya refused to try
and put her head down.

So, did her inability to engage with the task indicate that:

a) she didn’t recognize the pattern

b) she didn’t
understand the question

c) she didn’t want to try a task that would be simultaneously
cognitively taxing and physically close-to-impossible

Who knows. But for
scoring purposes, that’s a fail. This is a false
negative. The absence of a positive response in this situation doesn’t reliably
indicate a cognitive limitation, but it will be scored as one.

Pointing at pictures: When I first saw a flipbook
that would be used to evaluate receptive language, I thought it looked like a
great idea. Maya was probably around 2 years old when I saw the test
administered, and while I sat silently and didn’t interfere, I was surprised by
how something that at first glance seems fairly straightforward and objective
was actually very subjective and unreliable. There are a few things that need
to be taken into consideration when thinking about these tests.

1. Personality: Children with complex communication needs
often have a fairly passive personality with regards to getting their point
across (due in large part to the fact that other people--parents, siblings,
teachers--often step in to try to communicate for them). In addition to being
passive, our kids learn that sometimes acting clueless is a great way to avoid
the task at hand (hours of therapy reinforced this for Maya---act clueless, the
therapist will adjust the task or change to a new one). While I can’t speak for
all nonspeaking kids, Maya mastered “the blank stare” (in which she would
simply stare around like she didn’t hear anyone and had no knowledge of what
was transpiring around her) at a young age. I will never forget watching a new therapist
try to cheerfully get Maya’s attention to give her back her car keys: Maya! Maya, over here! Those keys are shiny,
right?! I’m going to need the keys back now! Hey, Maya! and then I was all Maya, quit it and give her the keys and
she looked up and handed them over. If a child stares blankly at an evaluator and doesn't engage with the test, that is not necessarily indicative of a lack of understanding. It's a false negative.

2. Modified abilities lead to modified experiences: One page of the receptive language test had images of art related items (crayons, scissor, glue, etc) and Maya was asked to identify the scissors. Maya
didn’t know what scissors were when she was two---she was an only child who
spent all of her time at home with me and in home therapy, and she had
basically no fine motor ability. She had never seen scissors. This is only one
example, but there were several. Did she
know what scissors were? No. Was this indicative of her ability to understand,
absorb, and recognize language? Of course not. It was indicative of the fact
that her atypical abilities were leading her through an atypical childhood. It
was a false negative. (I bet typical kids don’t know what chewy tubes or
z-vibes are---Maya would have nailed those ones.)

3. A will, but not a way: For kids with disorders like apraxia or other neurological conditions, there are times when their body does not follow the directions being sent out by their brain. They may be thinking "reach out and touch the scissors, reach out and touch the scissors" but then see their arm reach forward and their hand make contact with the glue. If I stand up and quickly spin in place several times, no amount of me thinking "now run in a straight line!" is going to make that actually happen. It's a physical limitation. Modifications can be made to tests and testing environments to attempt to minimize these effects, but neurological motor planning troubles must be taken into account as a possible source of false negatives.

4. Communication vs. Testing: Children who are functionally
nonverbal are often very interesting communicators who use a variety of methods to get their points across:gestures, sights, sounds, meaningful glances, avoidance. One thing that tends to be
fairly consistent is the ability to communicate via pointing and pictures: even
before Maya used picture cards or communication technology, she could
communicate by pointing to the pictures in a book. She pointed to the cow, I
would say “A cow! Mooooo!” She pointed to the moon, I would say “That’s the
moon! It comes out at night.” Or, outside of books, if she pointed to the
refrigerator, I would say “Are you hungry?”

During these tests our children are presented with a field
of images and asked a question that has an “obvious answer”. The problem is
that presenting a nonspeaking person with a field of images can be akin to
saying “Check these out! Which one speaks to you? Which one reminds you of
something? Which one do you want to talk about?”

I'm willing to bet that if I showed this to Maya and said "Which picture shows the car in front of the house?" she would point to the first picture, look pointedly at me, and laugh. Translation: "Mom! There's a car driving into a house! This is ridiculous! . . . Wait, did you ask me a question?"

Example: Maya was 2(ish) and was in the middle of a
receptive language test. The doctor flipped the page and said “Which one is the
hairbrush?”, and Maya pointed to the toothbrush instead of the hairbrush. Obvious
wrong answer, obvious confusing of one "brush" with another, right? No, not right. We
had been talking about tooth brushing at home all morning. We had read a book
about going to the dentist. We had bought a new toothbrush the day before. When
the doctor flipped the page and asked about a hairbrush, Maya was already
fixated on the toothbrush (which looked just like hers, by the way) and
reaching toward it. As she tapped it, she turned to make eye contact with me. I
saw her saying Look! A toothbrush, just
like mine! We were just talking about brushing teeth! The doctor saw the
wrong answer. A false negative.

Parents, take heart. Professionals, take heed. There is no
reliable standardized way to assess the receptive language or cognitive function of a person
with complex communication needs. Even now, with a robust language system, Maya
has a way of seemingly jumping to unrelated topics that are actually related (but their relation is something that only she would know). Here’s a final example: On Tuesday Maya went to her after-school speech therapy,
and this happened:

Therapist: “How was school?”

Maya: (glancing at the fire alarm over his head, in the corner
of the room, and then using her device

to spell) “f-i-r-e.” (copied from the side of
the alarm box)

Therapist: (looking up at the alarm) “Yes, that says ‘fire’ .
. . but let’s focus-I asked you how your

day was. Did you have a good day at
school?”

There was no way for him to know that her school had a fire
drill that morning.

He thought she wasn’t paying attention, but she actually was
telling him about her day.

Wednesday, October 29, 2014

It's the final Throwback Thursday post of AAC Awareness month (but happening on a Wednesday so that today I can write something new for tomorrow). For the grand finale of TBT, here is my master AAC post: Communication Before Speech.

one of my favorite cartoons, by artist Mohamed Ghonemi

This post is a compilation of my best AAC posts, filled with external links, and sprinkled with counterarguments to the anti-AAC comments that I see time and time again (Just use sign language! Have you tried supplementing with fish oil?).

Tuesday, October 28, 2014

Take-a-Look Tuesday brings you two AAC videos made by AAC users--one is informative, one is funny, but also informative, if you don't know any adult AAC users and haven't had a chance to see adults fluently using AAC (since many of our readers have/work with young AAC users.

First up, The Language Stealers. From the video's YouTube description:

As part of the Radiowaves Street Life project, funded by Youth In Action for the British Council, and with additional funding from Co Durham Youth Opportunity Scheme, animator Vivien Peach working with us at Henderson House, Chilton. We made Language Stealers to promote our 'Equality Without Words?' campaign and the language boards of core words we are making.

Language Stealers is a story of attribution, exposing the real barriers to communication for students with speech and motor impairments as being more to do with the situation they find themselves in than anything to do with their disposition. If nobody gives us a way to say or write the core words, or only gives us lesson nouns to go on class worksheets but no literacy instruction, then how dare they attribute our language delay to lack of ability?

Next up, the Voice by Choice Comedy Sketch. This makes me smile every time I see it! Set in the context of adult AAC users at a speed dating event, it's also a commentary on some of the challenges that AAC users face: time lag, mishits, and limited voice selections. (You need to know that "bugger" is "used to express annoyance or anger" ---although not as commonly here in the US. Urban dictionary info here.) From the video's YouTube info:

This comedy sketch was written and stars Lee Ridley (aka Lost Voice Guy) and looks at the funny side of going speed dating whe you use a communication aid.

Monday, October 27, 2014

Like many others, I spend a great deal of time each week reading articles, blog posts, websites, and research that can guide the stuff that I do with Maya. This week I've been thinking a lot about her reading abilities (again) and trying to figure out how to assess her and move forward. One of the best websites out there about literacy for AAC users is this one, from the powerhouse team Janice Light and David McNaughton. That site is my resource share today---with you all and with myself. It's a site that I come back to every few months, poke around, and then think "I need to figure out a plan." So it's hear as a reminder for me, and a site you might want to file away.

Literacy can be tricky business for functionally nonverbal people (it's difficult for me to imagine sounding out words without being able to use my voice to do so), but it's probably the second most important thing I can work on with Maya---my goals have been "get her a voice, then get her reading."

Friday, October 24, 2014

A 3 year old boy learning about the words "hide", "find", "open/shut eyes", and "look" using a Pixon communication book and rice bins with his SLP, Shannon, in New Zealand! (See Shannon's website here!)

Mirabel, age 3, using Speak for Yourself during a shopping trip!

Sammie being silly while discussing Aunt Dawn, who has actually run multiple marathons and is the opposite of lazy (and doesn't eat pepperoni, either)!

Gathering the devices, joysticks, switches and stands we are using in a project we're doing on best practices for apps for communication! (from Sandra, AAC technician at DART, Western Sweden's Centre for AT and AAC)

3 year old Harry in Australia practicing for Show and Tell at childcare using Go Talk Now!

AAC up and ready to communicate with while trying to study in the college library . . .

and the back of her Lifeproof case modified with stickers!

Photos of Isaac, age 4, using TouchChat with Word Power to talk with his cousin while at the playground . . .

and talking about colors with his mom!

Nicole (25) picking out her pumpkin at the pumpkin farm - wearing her talker, of course!

Tia learning about fall field and harvest with her Boardmaker board in a communication binder . . .

Here is Nathaniel the first time he saw his talker. Someday we'll learn all those words! (Check out his mom's blog here)

Tom is an 11 year old multi-modal communicator who is also using Speak for Yourself . . .

and wanted his dad to take him to buy some hot chips!

Reese has been around devices since he was a puppy. When we were developing and testing Speak for Yourself, I would use it to ask him if he wanted to eat or go for a walk, so he learned to listen to AAC. Now he comes over anytime I'm working with it...in case there's something in it for him! (From Heidi, of the Speak for Yourself team)

Daniel said the first sentence as soon as he saw Elmo on tv, and the second when a Geico commercial came on (geckos totally look like frogs)!

Abby at Camp Communicate in Maine, talking about pirates!

This is Lily Grace with her mama, grandma, and PODD communication book at the beach!

Josh and his friend have been in the same class since they were 3, and sometimes they even use each other's AAC!

What's better than one communication device? 3!

Jack teaching his grandpa, Pa, how to use his iPad!

This is an old picture of ours (back when we used a full size iPad and a keyguard). I told Maya that it looked "a little sunny" and she replied "big sunny" :)

Thanks for all of the contributions---next week is the final Friday in October! For the final #AACfamily during AAC Awareness month, you can send in any AAC related photo. Send photos to uncommonfeedback@gmail.com by Thursday night at 8pm EST.